Wednesday, January 07, 2009

23 days old...

FINALLY! An update! I'm sorry it's taken me a little longer to get this one posted, but thanks so much for caring how our little family is doing - I'll try to post more often.

Connor continues to be stable since his surgery on New Year's Eve. He's still on a ventilator, but is currently receiving no additional oxygen (breathing room air), and even breathing additional breaths against his vent. His heart rate and oxygen saturations have also been very strong. The past two days, he's been quite alert during our visits, and we've caught a few smiles!

The biggest development/issue we're dealing with right now is the area surrounding his incision. The surgeon believes that possibly another portion of his bowel has died around his stoma catheter, which has been causing his stomach secretions (acids and bile) to seep onto the tender skin around his incision. These fluids caused a serious and scary inflammation of his incision, and it basically began opening back up. As far as we know, his fascia has remained intact... but it looks so bad, the nurses were taking pictures of it, and contacting his surgeon for consults several times per day over the past week. Yesterday afternoon, we arrived for our family conference, and there were 6 people gathered around his isolette... sales reps for the new wound dressings, a wound specialist, and other nurses and doctors... while new dressings and a wound vac were applied. Rather than have his dressings changed every 4 hours (previously just a square of gauze held in place by his diaper), the new solution consists of fancy, high-wick dressings cut to fit his wound, a colostomy bag, and a wound vac to suction up his secretions (keeping them away from his incision)... and will only need to be changed every few days. They're still keeping him comfortable with morphine, and they've adjusted the number of handlings he has to go through every day - peace of mind to his parents that his pain is kept to a minimum.

Even with all of his incision drama, we're still in a wait-and-see pattern regarding his NEC. So far, according to his frequent blood tests, it doesn't seem like there's any further infection brewing. He's also been needing fewer blood and platelets transfusions, another good sign. If the NEC has resolved, he'll undergo another surgery in 4-6 weeks to reattach the two ends of his intestines.

As far as his IVH goes, they're telling us that there has been no change. We really won't know much more until he's at least 6 weeks old, and it sounds like he'll have an MRI at that point.

Connor is so strong, and continues to amaze us with how he's been hanging in there. While we haven't been able to hold him since Christmas, his nurse today raised the roof of his isolette, allowing us to get a little closer to him - kissing him and touching him more. Sometimes, it feels like it's just been one issue after another for little Connor. The nurses keep reminding us of how resilient these little babies are, so we're trying to remain positive with everything, and looking towards the future. We've been told that in the NICU it's one step forward, two steps back. This is the craziest rollercoaster ride we've ever been on!

Have we thanked all of you lately for your love and support?? One of the highlights of our day is checking e-mails and comments each evening. It really means a lot... you'll never know how much!

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comments:

Oh Aimee! I'm so glad you posted... I must have checked your blog 5 times today! So great to see the pictures of your adorable boy and hear that he's receiving such great care. I love you and think of you often. Please know that you are in my prayers and thoughts daily.

Wow, I can't believe Connor is almost a month old already!! He is such a strong little boy enduring all this. I hope you are recovering well from your c-section. Connor's looking so cute with a little chubb in his cheeks. :)

Welcome to the weekend. I hope it affords quiet time with Connor. Aimee, I think in four weeks you have surpassed my medical vocabulary; a demonstration of your devotion to Connor. Thank you for your blog. I love to see the photos of Connor with his parents. Each captures his beauty and the love he is surrounded with. Love to you all, Mary Clark